The impact of congenital cytomegalovirus infection among families and caregivers: a qualitative analysis of responses to a public consultation on newborn screening in the UK

Objectives: To describe the impact associated with congenital cytomegalovirus (cCMV) infection and experiences and perceptions of people with experience of CMV in pregnancy and families / caregivers of children diagnosed with cCMV, who responded to a UK National Screening Committee (UK NSC) public consultation on cCMV screening. Methods: The public consultation was conducted in 2021-22 on a draft evidence review and was aimed at informing the UK NSC’s decision on newborn screening for cCMV. Data were analysed using framework analysis: a subgroup of responses was inductively coded, codes were refined and initial themes identified, before targeted coding of the remainder of the data and identification of final themes and sub-themes. Results: Of a total 155 responses, 125 (describing 128 pregnancy/child outcomes) contained information relevant to the coding framework and were included. Most (n = 109) described a live birth of a surviving child, of whom 90% (98/109) were living with symptoms or long-term sequelae of cCMV at the time of the response. Two main themes were identified: missed opportunities and emotional impacts attributed by respondents to not screening for cCMV. Many families described delays in their child’s cCMV diagnosis, including due to healthcare professionals’ lack of awareness of cCMV, and viewed newborn screening as a solution to avoid delays in diagnostic pathways. Diagnostic delays resulted in a lasting sense of injustice and unfairness due to possible missed opportunities to improve outcomes (e.g., through antiviral treatment or early therapies), as well as uncertainty and anxiety. Conclusions: Responses were predominantly from parents and caregivers of children with cCMV who experienced long term disability. They highlight significant gaps in awareness, support and health care for affected children that need addressing, regardless of national screening policy decisions. These responses contribute to the literature on lived experiences of individuals and families affected by cCMV.